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AbstractThis paper argues that data-driven medicine gives rise to a particular normative challenge. Against the backdrop of a distinction between the good and the right, harnessing personal health data towards the development and refinement of data-driven medicine is to be welcomed from the perspective of the good. Enacting solidarity drives progress in research and clinical practice. At the same time, such acts of sharing could—especially considering current developments in big data and artificial intelligence—compromise the right by leading to injustices and affecting concrete modes of individual self-determination. In order to address this potential tension, two key elements for ethical reflection on data-driven medicine are proposed: the controllability of information flows, including technical infrastructures that are conducive towards controllability, and a paradigm shift towards output-orientation in governance and policy.

AbstractIn discourses on digitization and the data economy, it is often claimed that data subjects shall beownersof their data. In this paper, we provide a problem diagnosis for such calls fordata ownership: a large variety of demands are discussed under this heading. It thus becomes challenging to specify what—if anything—unites them. We identify four conceptual dimensions of calls for data ownership and argue that these help to systematize and to compare different positions. In view of this pluralism of data ownership claims, we introduce, spell out and defend a constructive interpretative proposal: claims for data ownership are charitably understood as attempts to call for theredistributionof material resources and the socio-culturalrecognitionof data subjects. We argue that as one consequence of this reading, it misses the point to reject claims for data ownership on the grounds that property in data does not exist. Instead, data ownership brings to attention a claim to renegotiate such aspects of thestatus quo.

In diesem Open-Access-Buch untersuchen wir, was Datensouveränität aus ethischer und rechtlicher Perspektive bedeuten kann und entwickeln mittels des Modells der dynamischen Einwilligung konkrete Governance-Ansätze für den Gesundheitsbereich. Im Zeitalter der Digitalisierung stellt uns der verantwortungsvolle Umgang mit Daten vor eine Herausforderung: Mögliche Fortschritte in Forschung, Versorgung und öffentlicher Gesundheit rufen Fragen von Datenschutz und Kontrollansprüchen auf. Ein normatives Leitkonzept, das in den vergangenen Jahren beim Umgang mit Daten in den Vordergrund tritt, ist Datensouveränität.